Little person, big heart: Jayci Simon of St. Johns to represent U.S. at World Dwarf Games

12-year-old Jayci Simon of St. Johns will represent Team USA in the 2017 World Dwarf Games in Ontario, Canada. Cody Tucker/Lansing State Journal

Jayci Simon, 12, dribbles a basketball at City Park in St. Johns on a humid Monday afternoon. Simon will compete in the 2017 World Dwarf Games Aug. 4-12 in Canada as a part of Team USA.(Photo: Cody Tucker photo)

She head fakes before going behind the back and attacking the rim. Her finishing move -- a reverse layup -- finds its way through the net.

Her skills are advanced for a seventh grader.

“How old are you? You are absolutely amazing,” a man shouted from a gray car stopped at the intersection.

Simon smiled.

“12,” she said, not the answer the driver was expecting.

“We get that a lot,” Jayci’s mother, Amy Simon, said. “She brings a lot of attention, that’s for sure.

“Plus, that guy hid it pretty well.”

Jayci stands 3 feet 7 inches tall, more than a foot shorter than most American girls her age. She has a form of dwarfism called acromicric dysplasia, a diagnosis so rare that most doctors have never even heard of it.

The Simon family didn’t learn of Jayci’s official diagnosis until she was 7.

Simon learned to not take offense to the shock on people's faces when they learn her real age.

“We are constantly learning,” Amy Simon said. “It’s been 11 years of constant research. Eleven years of doctors, medical examinations, hospitals, surgeries and physical therapy. I feel like I have a pretty good medical background now.”

On a humid Monday afternoon in St Johns City Park, Jayci wasn’t too interested in talking about her past or the six painful surgeries she's endured on her wrists, fingers and right foot.

Today was a day to showcase the work she has put in over the last 1,460 days.

Friday, Simon, along with more than 20 family members and friends, will head to the seventh World Dwarf Games in Guelph, Ontario, Canada, for the world’s largest sporting event held exclusively for athletes with dwarfism.

Every four years, little people of all ages take part in the highly competitive events and recreational sports modeled after the Olympics.

Jayci never wanted to attend Little People of America conventions. She didn’t want to be labeled.

She just wanted to be like other kids, and her family treated her that way.

The 2013 World Dwarf Games, held in East Lansing, changed that.

More than 400 athletes representing 17 countries came to the campus of Michigan State University that summer. That's when her oldest daughter started to dream of competing on the world stage, Amy Simon said.

In Guelph, Jayci will compete in the 40-and 60-meter dashes, a 40-meter relay, discus, shot put and javelin in track and field, along with basketball, soccer and badminton

“I am excited to play against other countries,” she said. “I am also excited to play with other little people, who are more my size.

“It gives me more of an advantage.”

The No. 53 jersey she was sporting Monday is another source of pride. It’s navy blue with red block letters outlined in white. It reads: “USA.”

“I feel very lucky and proud to get this opportunity and to play for the USA,” she said.

Always smiling, Jayci Simon of St. Johns, along with 20 of her closest friends and family, will travel to the 2017 World Dwarf Games in Guelph, Ontario, Canada. Simon was diagnosed with Acromicric Dyspepsia, a rare form of dwarfism, when she was seven years old.(Photo: Cody Tucker photo)

Fueling the fire

Jayci Simon’s badminton shoes were damaged during the shipping process. Her mom was on the phone with the shoe company trying to figure out a last-minute solution.

“Are you drinking coffee? It’s so hot,” Simon said, sitting on her basketball and shading her eyes from the sun

Simon is a sparkplug.

She has strawberry blonde hair pulled back tightly into a ponytail with a red, white and blue sweatband pressing it tightly to her head. A row of freckles runs from cheek to cheek and across her nose.

Her most noticeable feature is not her size, but her dimples, which draw attention from the infectious smile hidden behind her braces.

She wears neon blue basketball shoes with green soles and pink laces. With her full Team USA uniform, Simon isn’t here to just chat. She wants to play.

Shot after shot rings off the rim and backboard. At times, the only noise in the park is the swish of the ball going through the hoop. She isn’t used to shooting at a 10-foot rim, but she is familiar with bigger competition.

An incoming seventh grader at St. Johns Middle School, Simon can’t play sanctioned sports for the Red Wings. The daily practice regimen would be too painful on her joints. But that doesn’t mean she is afraid.

“I like being active and competing,” Simon said. “I like to think outside the box. In basketball, other players tower over me. I just pass it through their legs.”

“She is short, but she is tough,” Amy Simon said. “She’s quick. No one expects much from her, so some take it easy. She is scrappy though. They don’t know how to play against her.”

Simon’s cousin Carson Pieters was born 8 days after Simon. He is also an incoming seventh grader at St. Johns Middle School.

He's had a front-row seat to her recreation league and playground exploits and said he's been most impressed with her confidence facing bigger, older kids.

“She never gives up,” Pieters said. “She just never doubts herself.”

Simon loves playing sports with her cousin. She also appreciates his support in the face of teasing and bullying.

“Her friends always back her up,” Pieters said. “She has a ton of friends, and we always stick up for her.”

In her early elementary school days, Amy Simon said, the taunting and questions about Jayci’s size would bother her.

“Now, she just shrugs it off. It motivates her.”

Jayci’s father, Chad Simon, said his daughter started “taking the bull by the horns,” explaining to classmates what her diagnosis was so that they could ask her questions.

He doesn’t know where the confidence comes from, but it amazes him every day.

And the ridicule and snickering still fuel her fire.

“During basketball and soccer, people will stare at me and whisper,” she said. “It just makes me more determined to kick their butt.”

Jayci Simon, 12, has endured six surgeries in her life, including procedures on 7 of her 10 fingers, both wrists and her right foot.(Photo: Courtesy photo)

Surgeries

At the age of one, Jayci plateaued on the growth charts.

Concerned, her family didn’t receive many answers early on. Amy Simon, a speech pathologist during the day, turned into a medical researcher at night, surfing through page after page of anything she could find on dwarfism.

She read about achondroplasia, the most common form of dwarfism, accounting for more than 70 percent of all diagnosis. Jayci didn't fit the bill. Then she discovered that there are more than 200 types of dwarfism, some that are never even determined.

With doctors unable to determine a diagnosis, Amy Simon said she made the biggest mistake of her life. She “Googled.”

“That’s never a good idea,” she laughed.

Of all the “facts” she discovered, one stuck out. She read that some people with dwarfism have shorter life expectancies. Turns out, that is not the case for Jayci.

“Thankfully,” Jayci chimes in, once again sitting on her basketball and shielding her eyes from the sun.

In layman’s terms, Jayci's joints and ligaments are stretched tight like rubber bands. The pressure and inflammation cause chronic aches and pains.

“See, I can’t even make a fist,” Jayci said, extending her hands out in front of her. “It was painful.”

She had her first surgery at 4 years old. She has had carpal tunnel surgeries. Seven of her 10 fingers have been operated on, some twice. She had a procedure on her foot.

Chad Simon recalls a time after one of Jayci’s surgeries when she was in excruciating pain. He talked about how brutal it was to watch his daughter in so much pain, but the pride he felt in her words.

“Her mom said, ‘I wish I could just take your pain away,’” Chad Simon remembers. “Jayci said, ‘Me too, but I still want to be a little person.’”

Amy Simon and her three daughters, Kenadi, 7, (from left, clockwise), Jayci, 12, and Gracyn, 10, are just a few members of the "fan base" that will head to Ontario, Canada, to watch Jayci compete in the World Dwarf Games Aug. 4-12.(Photo: Courtesy photo)

Competition

Jayci Simon keeps a very strict workout regimen. Some days she runs sprints and does yoga. Others are reserved for distance running, hoops or badminton practice.

Chad Simon said he made it a point not to push his children into sports or to put much weight on winning and losing. He doesn’t know where his oldest daughter picked up her competitiveness, but he recalls the day he first noticed it.

“I remember her first basketball game in kindergarten. It was just drills then play a little game,” Chad Simon recalled. “There was no stealing the ball. She didn’t know the rules, and she stole the ball and the ref made her give the ball back. She was just fuming.”

Her sisters, Gracyn, 10, and Kenadi, 7, don't share her interest in sports. The sun and sticky humidity were too much for them that afternoon. They were sitting under a row of pine trees in the shade.

“I am not really a girly girl,” Jayci said with a smirk. “I try to bribe my sisters. I tell them that if they play basketball with me, I will play baby dolls with them for 10 minutes. It doesn’t work very often.”

Jayci knows she is at a disadvantage in the schoolyard. But Canada will be a different story. There she will face other little people, people who most resemble her stature.

Her cousin Carson is looking forward to the four-hour trip to Guelph. He sees what Jayci does on the courts in St. Johns against average-size kids. He thinks she has a good shot to be dominant.

“I am super excited,” he said. “I’m 100 percent sure she will do good in Canada.”

Chad Simon is confident his daughter will find success on the fields and courts. He hopes she'll have the time of her life.

“We always forget the fact that she is a little person. To get this opportunity to be around similar people, I can’t imagine what that means to her.”

Leaning against a chain-link fence, Amy Simon watches her daughter drive to the basket and take shots from so far away that it takes all her might to get the ball to the rim.

She never imagined she would be watching her daughter prepare for an international athletic competition, the biggest week of her life.

“It brings tears to my eyes,” she said, rubbing her eye under her sunglasses.

“I am obviously proud of her, but she takes everything in stride. Her self-acceptance and her fighting spirit, those are things you can’t teach. She blesses everyone around her. She is an inspiration.”

For Jayci, it’s all about quieting her doubters.

“I just try to prove people wrong,” Jayci smiled, and she dribbled the ball back to the key for another shot.

Jayci Simon developed a love of sports thanks to her father, Chad Simon. He said he was intense as a player in St. Johns, but never pushed Jayci to play. She developed that on her own, he said.(Photo: Courtesy photo)

Contact Cody Tucker at (517) 377-1070 or cjtucker@lsj.com and follow him on Twitter @CodyTucker_LSJ.